The Pink Perspective on my life with Cystic Fibrosis

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Why Me?

Warning: This blog post deals with death in people with Cystic Fibrosis. It is up to you (or your parents/guardians for those under 18) to decide if you want to read it.

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Why am I still alive at 41 years old, when so many people with Cystic Fibrosis didn’t get the chance to go to high school, college, have a job or get married? Why am I not on Oxygen permanently yet? Why am I not sick enough to need a Lung transplant yet?

Taken too soon.

Whydid Rita, who was severely sick from a very early age, die at just 21 years old, leaving behind a precious little girl and a shattered future? We shared a doctor and a hospital, and when she passed, it was the first time I ever saw my doctor cry.

Why did Mike, one of the first people with CF I met online who was close to my age, and whose experiences with CF seemed very similar to mine, die just two weeks after we last talked? He had undergone a routine medical procedure that left him on a ventilator, and things went downhill quickly. It was unexpected, and was a huge blow to our community.

Why did my CF mentor, Pam, who taught me so much more than the doctors did, who lived like nobody else I had ever known, who did everything “right,” someone who embraced every day with positivity, and who faced every challenge as a new adventure, have to leave this earth when so many other people who didn’t appreciate life even one-tenth the way that she did, get to stay alive, wasting the gift of health that they’d been given?

Why does CF take so many people too early, while other people smoke, drink, and keep up habits that destroy their precious lungs, pancreas and livers – the organs that fail and ultimately cause death in most CF patients?

Survivor’s guilt is difficult to handle. It almost seems ungrateful to have any feelings other than absolute gratitude when one has “survived” something that others have not, or lived longer than others with similar issues and circumstances, but it’s also very human to question.

Surely, I should celebrate every day I have and the life I’ve been able to live, and remember not how my friends died, but how they lived.

My faith tells me that perhaps I haven’t yet done done everything I was put here on earth to do. Perhaps, Rita, Mike and Pam fulfilled their destinies. I don’t pretend to know anything for certain, but I’d guess that none of those who have gone before me would want me to waste one more minute wondering why I am still here, and instead do something with the time I have.

It has taken years, but I feel that I’ve finally learned that lesson. I just hope that I didn’t learn it too late.